Recognition is growing that some population subgroups are particularly vulnerable to receiving suboptimal health care and to failing to achieve health outcomes equivalent to those experienced by the general population.205–207
Vulnerability is multifaceted. It can arise from age, race, ethnicity, or sex (or gender); health, functional, or developmental status; financial circumstances (income, health insurance); place of residence; or ability to communicate effectively.205 Moreover, many of these factors are synergistic, so that
vulnerability has many sources that present a complicated picture for persons in these groups. This definition encompasses populations who are vulnerable because of a chronic or terminal illness or disability and those with literacy or language difficulties.150,206 It also includes people residing in areas with health
professional shortages.168
Administration of PROMs is usually performed with paper-and-pencil instruments, and multilingual versions of questionnaires are often not available. Interviewer administration is labor-intensive and cost-prohibitive in most health care settings. Therefore, patients with low literacy, those with certain functional limitations, and those who do not speak English are typically excluded, either explicitly or implicitly, from any outcome evaluation in a clinical practice setting in which patient-reported data are collected on forms.
As PROs continue to play a greater role in medical decision making and evaluation of the quality of health care, sensitive and efficient methods of measuring those outcomes among underserved populations must be developed and validated. Minority status, language preference, and literacy level may be critical variables in differentiating those who receive and respond well to treatment from those who do not. These patients may experience different health outcomes because of disparities in care or barriers to care.
Outcome measurement in these patients may provide new insight into disease or treatment problems that may have gone undetected simply because many studies have not been able to accommodate the special needs of such patients.206,208
Literacy
Low literacy is a widespread but neglected problem in the United States. The 1992 National Adult Literacy Survey (NALS)209 and the 2003 National
Assessment of Adult Literacy (NAAL)210 measured three kinds of English
language literacy tasks that adults encounter in daily life (prose literacy, document literacy, quantitative literacy). Almost half of the adult population experiences difficulty in using reading, speaking, writing, and computational skills in everyday life situations. An additional seven million adults in the US population were estimated to be nonliterate in English. Generally speaking, health literacy problems complicate matters of both health care delivery and PRO measurement.211,212
Health literacy is “the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions.”213 This involves using a range
of skills (e.g., reading, listening, speaking, writing, numeracy) to function effectively in the health care environment and act appropriately on health care information.214, 215 Limited health literacy is widespread214,216 and is associated
with medication errors, increased health care costs, hospitalizations, increased mortality, decreased self-efficacy, and inadequate knowledge and self-care for chronic health conditions.211,214,217–219 Health literacy may be more limiting than
functional literacy because of the unfamiliar context and vocabulary of the health care system.212,214,220
Contributing to poor understanding of the importance of literacy skills is the fact that low literacy is often underreported. The NALS reported that 66 percent to 75 percent of adults in the lowest reading level and 93 percent to 97 percent in the second-lowest reading level described themselves as being able to read or write English “well” or “very well.”209 In addition, low-literacy
individuals are frequently ashamed of their reading difficulties and try to hide the problem, even from their families.221,222 Lack of recognition and denial of
reading problems create a barrier to health care. Some low-literacy patients have acknowledged avoiding medical care because they are ashamed of their reading difficulties.221,222 In addition, because everyday life may place only
their reading problems until a literacy-challenging event occurs (e.g., reviewing treatment options, reading a consent document, completing health assessment forms).221,222
A reader’s comprehension of text depends on the purpose for reading, the ability of the reader, and the text that is being read. Two important factors in the readability of text are word familiarity and sentence length.223 Unfamiliar
words are difficult when first encountered. Long sentences are likely to contain more phrases or clauses. Although longer sentences may communicate more information and more ideas, they are more difficult for readers to manage than more, but shorter, sentences that convey the same information. Moreover, longer sentences may also require the reader to retain more information in short-term memory.224–227
Addressing health literacy is now recognized as critical to delivering person-centered health care.228 It is an important component of providing
quality health care to diverse populations, and it will be incorporated into the National Standards for Culturally and Linguistically Appropriate Services.229
For example, translating highly technical medical and legal language into easily understood language is challenging, whether into English or another language. Health literacy practices are also included in the National Quality Forum 2010 updated set of safe practices.76 A recent discussion paper summarized
10 attributes that exemplify a “health literate health care organization.”228
These attributes cover practical strategies across all aspects of health care, from leadership planning and evaluation, to workforce training, to clear communication practices for patients.